tmi

The Dr. today, the melanoma specialist of Utah, agrees with the first surgeon: Try the vaccine injections first.

I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?

I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!

He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.

Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.

The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.

"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"

I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.

Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.

That hurts to even write it, but that is what I feel like.

In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.

On the brighter side, let me tell you all the good things the Dr. had to say:

*"I've seen people come back that haven't had melanoma for 30 years."

*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."

*"I have seen some very dramatic responses with this trial."

*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."

In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."

But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.

How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.

A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!

what a joke

Alisa Linton paces her homes' narrow hallways wearing her hello kitty robe and a furrowed brow. The kids are asleep, the husband is at the park with the dog. Thoughts are the only noise. They are loud enough she now has a headache. She has read and reread all her medical reports of the last 4 years. Researched treatment options in all her spare time. Tomorrow is her Day of Decision. Her flight instinct can no longer protect her. Time to fight.

And she is ready.

Giving myself pep talks only goes so far. What do I really want to hear the Dr. say tomorrow? "Just kidding!"

a spoon full of sugar

I could not dream up a prettier place. I need to get the pictures on my computer and share.

big pills to swallow

For this solar powered girl, Hawaii was just the thing. Walked into the Dr.'s office today feeling hopeful and resilient.

Walked out feeling weak and defeated.

I wanted to go to this particular Dr. again because last time when we found out the 50/50 chance of life he gave me a great pep talk on how to "fight hard" and keep a "positive attitude" and how I "can do it", etc. So I was kind of hoping for that today again, as the previous appointments haven't been exactly cheery and inspiring.

First thing he says after hello: "Well, I'm sure you have done some research and know this is a bad thing to have come back."
I looked at him strait in the eye. "How bad?"
Silence. Finally: "This is likely....fatal."
That last l hung in the air. A capital L.

I hope I'm making things up, and that I'm blowing things out of proportion, and that I am wrong in all my research. But here's what I'm finding: Although technically a stage IIIc (bad enough, 27% 5 year survival and 19% 10 year survival), I think I am more in the class of recurrent melanoma (melanoma which has come back after initial treatment), which is awful and usually grouped with stage IV when researching treatments.

This is the kind of thing I am reading on cancer center websites:

Patients with metastatic melanoma who have failed initial systemic therapy are infrequently cured with additional therapy. There are many choices of therapy and access to newer treatment strategies in clinical trials. These therapeutic choices may prolong survival, reduce symptoms of progressive cancer and/or offer the chance of cure. Patients need to assess their treatment options and consider their individual goals for receiving additional treatment.

Treatments that are part of curative and palliative strategies include: single agent and combination chemotherapy; biological therapy with interferons; interleukins and vaccines; combination chemotherapy and biologic therapy; external beam radiation; isolated limb perfusion techniques and surgery.

MY individual goal is cure. Don't read into this that I have given up hope, or think this thing can't be beat. It does happen, so why not happen to me? I have lots of things going for me. My cancer is only in my limb as far as they can tell. That is great. I found it relatively early, and only have one known spot now. This means my tumor burden is low, which gives whatever I'm going to do a better chance at working. I have Dr.s who can perform all the procedures and offer clinical trials. I am young and healthy. I can handle the more rigorous treatments. I am surrounded by people (many virtually) who pray for me.

So...I'm meeting with one more Dr. on Tuesday. Hopefully surgery the end of next week. The two major options after excision seem to be the isolated limb infusion (ili, chemo put directly into the leg during surgery) or the biochemotherapy (imunotherapy combined with chemotherapy). The surgeon today was thinking ili might be the better choice. The Dr. I am seeing next week has the reputation as best in the state, so I hope he has an idea which would be better. Or as things have been shaking down lately, he might suggest something totally different. Wow, I just need a plan. This is draining.

mean time

I am having my results reviewed by some different doctors, and meeting with another surgeon on Friday next week. Surgery most likely the week after. It has been so hard to hear all the different opinions on what to do next. I'm good at being told what to do and getting it done. But they all say they can't tell me what is best. I just can't wait around here anymore. We are headed to Kauai this morning. It's the only thing that is feeling right right now.

appointment

No decisions on treatment made today. I will be doing some research and getting a second opinion. There is no treatment that helps everyone, just a handful that some of the people respond to. It could be as easy as an injection in the tumor twice a month, saving the harder treatments if that doesn't work. I have such a headache, I wish I knew just exactly what to do.

in, like, a lion

We have had a wonderful, normal day. I am feeling lots of love and prayers. I know I could feel bitter right now, but I mostly just feel blessed.

Below is my facebook post about 6 months ago. It is a short summary of my history with cancer. I don't know why it took the Dr.s telling me I was clear for me to believe it. But it was so much fun to believe!!

The Perfect Brightness of Hope

by Alisa Johnson Linton on Tuesday, September 21, 2010 at 10:45pm

September 21, 2007 we learned that the melanoma I was previously diagnosed with had spread to three of my lymph nodes. Everything seemed so depressing and hard. At my stage (IIIB), I was given a 50/50 chance of survival. I had two surgeries, and 9 months of medication. I have had scans every 6 months to make sure it hadn't come back.

Well, today was my last scan and it came back CANCER FREE! At stage IIIB, melanoma will usually reoccur within the first 3 years, the chance of reoccurring after is less than 10%, or some studies say 5%. I'll take it!! And run!! I actually am running a fever today with all this excitement. How can I help it? Under all this wonderful September sunshine, someone tells me I have a long life after all. Such a blessing, such a surprise, such a gift, such luck! Such happiness!!

I am so sincerely grateful for my incredible support group. Family, friends, and strangers that gave me strength and hope. And bless you-chocolate. For all the prayers and acts of kindness, THANK YOU!! So many tender mercies along the way. Like the $5,000 that Josh just won in a drawing that is taking us to....Disneyland!!! Magic!!!

Group Hug!!!

Way too many exclamation points, I know!! I know!!!

Three years ago and scared spit-less.

Last time! Did I mention I'm happy?

Wow. I was just reading the Sloan-Kettering article on relapse the Dr. handed me that day. Sure enough, less than 5% of recurrence happens after the first 2 years. It usually comes back much quicker. I beat the odds. Let's make that a trend.

I am so glad to say goodbye to February. My sister Sonja and I are always dreading that dreary month. Were our feelings foreshadowing February 2010?

Her son, my nephew, finished his first round of chemo. Updates here: http://stevenbattlescancer.blogspot.com
Go Steven!!